Getting it right - evaluating HFA's hepatitis C work

HFA then began the next stage of the needs assessment which was to evaluate HFA’s hepatitis C work and put the recommendations into action. This involved focus groups in two states and consultation with state/territory Haemophilia Foundations, health professionals and community agencies to:

Check that needs in the two states were consistent with the Report and see if there were other needs

Ask for feedback on HFA’s hepatitis C work

Work on implementing the Report’s recommendations.

Results

Most of the findings from the consultation were consistent with the Double Whammy Report. What information was different, new or extra?

Health and treatment

More discussion about the effect of having hepatitis C as well as a bleeding disorder and other health conditions. Health problems become more complex and impact on each other as people grow older. Some people have overload with health conditions and health services. Fatigue and mobility problems make it difficult for them to manage all of their health conditions. They deal with the most pressing issues and let others slip, sometimes with serious consequences for their health.

What would help? A more holistic approach to their care, having appointments co-ordinated, eg a multidisciplinary clinic. Help to keep track of multiple health problems, to deal with the health system and negotiate social services.

There has been a greater focus on hepatitis C care and liver health review in Haemophilia Centres over last 12 months. Still concerned about the liver health of people with hepatitis C who no longer keep contact with the Centres, mainly people with moderate or mild haemophilia or von Willebrand disorder.

Haemophilia Social Workers/Counsellors are vital in providing networking and communication between hepatitis clinics and Haemophilia Centres.

What helps with hepatitis C monitoring and treatment? Hearing other people’s experiences, reminders from the Haemophilia Centre to review your liver health, support from family/friends and social workers/counsellors, a good relationship with your specialist.

If you ask about the perfect consultation, I think these haemophiliacs, they’re like sports cars. They need to come into the pitt lane. We get the arthritis, we get the hep C, we get the HIV, and those when they combine, create a mental health issue. And also there’s counselling you need if you are in work. You are going to need some support to stay there. You need someone to help you get out of bed in the morning sometimes. You need rails in your bathroom. Other times you need other things. There’s far, far more being done about hepatitis C than I’ve ever really seen before. And I have seen quite a bit over the last few years.

Living with hepatitis C

There needs to be more work on how to deal with unsuccessful treatment or not being able to have treatment.

Finances: need a financial advisor to help make ends meet and flexible working arrangements to manage erratic health problems and appointments.

Support: men rarely ask for support directly. Many single men find it difficult to start new relationships. Carers also need support but sometimes do not know where to go for help. Would like a comfortable and facilitated environment to talk about clinical issues with other people.

Young people need education on hepatitis C, relationships, disclosure, finances, diet and exercise

I just think as a teenager it’s difficult because you know you’re different but you don’t want to be different. And you’re at a stage when you want to form relationships with the opposite sex or whatever and it’s a difficult situation to be in. Do you say something, don’t you say something? And that’s been very hard for my son. [parent]

Because if you have a chronic illness, you’re forking out money all the time. It’s not only hard to stay in work, the money that you get goes.

I had to use all my leave and then leave without pay. So, I’m at home, because I’m crook but there’s a period of time where there’s no money coming in. And that obviously affects paying off a mortgage or rent.

When you actually speak to someone who’s gone through it [treatment] – I’ve compared notes with people who’ve been on it – you get a clearer picture of what it is, you can relate better to them, than the way it was explained to you by the doctors.

Feedback on HFA hepatitis C publications

HFA hepatitis C information booklet: useful, concise, relevant. Some had not seen it before the focus groups. Add information on doctor-patient relationship.

‘Double Whammy’ Report: nearly everyone had received a copy. Too big for some, others found depth useful. Personal stories powerful; felt connected, encouraged to take action on health. Good to see HFA taking action on hepatitis C and providing evidence for government and health services. Break report down into shorter “bites” on topics and republish. Re-release summary as many missed it – was placed in front cover of report. Most had similar experiences; some had more positive experiences. Recommendations appropriate.

Made presentations to health professionals to raise awareness about hepatitis C issues for people with bleeding disorders

HFA recommended financial recompense to the Senate Inquiry into Hepatitis C and the Blood Supply in 2004. Although the Senate Inquiry made recommendations about financial issues, governments have not acted on them. HFA Board is currently addressing the financial support needs of members.

Many thanks to the people who took part in focus groups and the state/territory Haemophilia Foundations, health professionals and community agencies who were involved in the consultation.